This is going to be my last blog entry, at least for a long time. And I’m writing mostly because I know there are a few of you who periodically check back to see if I’ve written anything recently, only to be disappointed. So, I thought it was about time to let you know more formally that I won’t be continuing this blog and a bit about why. Thank you for reading as much as you did last year! It amazed me that I’d have followers at all.
Today, once again, is the anniversary of the day I was shot, and it’s fitting that I write this blog entry today. I didn’t quite go full circle in my blog as I had wanted to. I intended to follow the course of the year in 1973, from being shot, through rehab, and back to school again. But as can happen, my own life in 2010 got in the way.
First, during the summer, I was having trouble deciding who I was writing for, who I wanted my audience to be – my friends, my sons, other people with disabilities, a wider public? I still don’t know the answer.
And then I found there were other topics on my mind, memories from childhood, that I wanted to write about too – but that I felt uncomfortable putting into a Paraplegia 101 blog, not to mention they revolved around people still living so I hesitated to put my comments public. So, I went back into therapy to see if I could resolve all those questions. For those who don’t know me well, I had roughly 10 years of therapy from 1980 – 90, which did me a lot of good then.
On top of all that, my wrist pain came back with a vengeance in August and September, and totally upended my life. Figuring out what to do, then scheduling surgery and figuring out how to handle recovery took all my energy. I ended up staying home all the time to avoid activity and pain, and moving the surgery date up to October, cancelling a writing workshop I wanted to attend, and a vacation as well. I had De Quervain’s tendonitis release surgery in late October and then had a solid month of staying home recovering. The first week was really the only bad one, where I felt totally helpless. Once the stitches were out and the hard bandage replaced with a soft one life got easier, but I slowly added in activities, with driving being the last thing I attempted. One nice side of that month of recovery was working through the first level of Rosetta Stone Spanish – it was easy and didn’t require too much keyboard or mouse use.
At this point, I’m fully healed, no pain, no regrets at all about having done the surgery. It was truly a success story. And I’m still in psychotherapy, probably will be for some time. My time and energy is being spent partly on catching up on a lot of projects I put off last fall (like doing the round of medical checkups and some fixing up the house), then partly on sorting out new emotions coming up from therapy. I intend to dive back into the Rosetta Stone, and I need to get to work on planning for Jim’s and my next vacation – a 17 day eastern Mediterranean cruise in October, with stops in Istanbul and Greece, and with 5 extra days in Rome. Perhaps I’ll feel up to a blog by then!
For now, my plate is full, and my attentions are elsewhere. Everything is fine. I learned a lot while writing my blog and am totally happy I did it for even just the 8 months. It takes a lot of time to do each blog entry, and the shorter ones are sometimes harder than the rambling longer ones, so I’ve gained a lot of respect for bloggers, especially those who write every day. I got a lot of amazing feedback, from people I would never have expected, and it increases my desire to write overall. I still have a lot to say, about paraplegia among other topics.
Today is the 38th anniversary of the day I was shot, and this day is always one of reflection for me. If you reread my post from a year ago, you’ll see many of the same words I still write today. This is a day of reflection and quiet for me, not traumatic or anxious, just a sadness as if a good friend had died. I appreciate the good friends I have now, who would share this day with me. Thank you.
Saturday, February 5, 2011
Friday, August 27, 2010
Chess Widow
It’s Friday night, and I’m a chess widow. I kind of like this actually. The week is over, and I get a quiet night to myself. Even though I don’t work outside the house, I do work in one way or another all week, and Fridays for me are like Fridays for so many – that ‘ah’ feeling that the week is over, and the weekend is here. So, when Jim goes off to chess, I have a quiet evening to myself to read, or watch a chick flick, or to write. I could go out, sure, I even sometimes hear of others who are alone on Fridays on a regular basis. But, I’m introverted and recharge myself when alone. Well, alone with 4 cats.
Sometimes I look forward to Jim being out of town on business for the same reasons. It isn’t that I can’t wait to have him leave, it’s that I like my own time in the evening once in a while too.
Earlier today I was really looking forward to a long evening for writing, but it’s not been an easy day, and unfortunately that’s meant my energy level is lower than optimal for getting words together in an interesting essay. In fact I’d even say that some things have me feeling rather depressed. I almost hate to say that, for I suspect a few of my friends will be checking in on me in the near future to see if I’m ok. Well, that’s what friends do, I know. And I do appreciate their concern. I don’t want to stop writing because of how others will react. And I’m not saying leave me alone. But don’t worry about me, I basically am ok, just having a low day.
Here’s why:
My wrist is hurting again, enough that I’m taking anti-inflammatories again round the clock. It seems to be worst at night, so I’m wearing a brace as long as I can stand it when I sleep. It is pinchy and if I wake up because of a jab of pain, I become more aware of the other pinchiness of the brace and yank it off. The pain is a little different this time, sharp jabs of pain from time to time – more at night than when I’m awake. Before it was mostly when I bend the wrist this way or that, and now it seems to happen for no reason. I’m pretty close to going back to the doctor again. It is in the same location, I’m sure it’s the same tendon. I have to face the idea that my wrist pain is never going to totally go away on its own. And that means surgery. I was so optimistic before. The worst part though, is that from time to time, my left wrist hurts too. This is definitely a repetitive activity problem. Surgery – groan - if I have to rest my wrist that’ll mean staying in bed, lying down, unless someone rolls me over! I can’t even sit up without pushing down on my hands. The only thing that will get me through it, is that I’ll know it’s temporary.
I was doing a lot of cooking today, getting ready for a dinner party we’re having on Sunday – and I found myself wondering how much longer I’ll be able to do all this cooking. I made a vanilla bean panna cotta, which is wonderful, but means lifting a pot with 5 cups of hot cream and milk and pouring it carefully through a strainer into another bowl. Well, I cheated and used a ladle. I’ve already stopped making apple cake unless someone else is home to put it in and out of the oven. I used to be able to balance a cookie sheet with a heavy cake centered on it, in and out of the oven, with one hand, while my other hand held me safe in the chair. Probably explains why my wrists are vulnerable now.
[An aside about my apple cake -I got the recipe when I was a teenager. I think my friend had clipped it from a newspaper, and later I adapted it to an angel food pan. I've made it so many times I could make it in my sleep, though these days it's so heavy I need someone else home to get it out of the oven. Been my kids' favorite their whole life. When Stephen was a freshman at Berkeley living in the dorms, they would send out newsletters to parents, and one time they asked for recipes for favorite foods from home, that they would serve on a special "home cooked foods" night in the dining hall. My apple cake won for the dessert category. Stephen was very proud, though he did say it wasn't quite like mine.]
I’m still having problems with my chair making clicking noises. I really should be keeping notes on all the chair stuff. One day I’ll summarize all the hassles of getting a new chair and it’ll show that AFTER the chair arrives there can be months of adjustments. As of now I still have a not quite explained noise that appeared when I swapped my solid and pneumatic tires. I’ve put together pieces made by several different companies, and there’s a little bit of finger pointing going on. At this point, several visits and phone calls since the noise started, the best theory is that the handrims are not tight onto the wheel, or that the wheel lost it’s true when the solids were taken off of it, resulting in a poor fit between rim and wheel. I have an appointment on Monday to try some experiments, and should be able to figure this out then. Next step is shipping the whole wheel back to Arizona where the handrims were made to let the manufacturer try to solve this.
Last week was hot, and I really don’t do heat well. If I didn’t have AC I don’t know how I’d stand anything over 80 degrees. And this house is the pits! I’ve spent a lot of time trying to figure out why it won’t cool down. I know there are lots of reasons – too many halogen lights and electronic equipment, no heat blocking shades on 2 windows facing east, concrete right up to the sides of the house, raised ceilings - but last night when it was 60 degrees out, and all the windows were open, why couldn’t the thermostat in the house go below 77? I think the main problem with the house is the slate tiles on the sides of the house. They retain heat from the sun. Doesn’t help in winter, because there’s less sun! The slates look good, but when they start to fall off, they are getting removed, not replaced, and the whole house gets restuccoed. Maybe the main problem is that I hate the idea of air conditioning when it’s cool outside, and I don’t like spending the money on AC.
Today has been a rough day, mostly because I got off to a bad start. Vertigo was back, I assume I just slept wrong – too much on my left side. Maybe one cat was up against me and I leaned my head back too far. Who knows? It totally messed up my morning, so that I didn’t get out to do the chores I wanted to. They’ll keep till tomorrow. It’s ok, it’s ok.
This should be my mantra – it’s ok, it’s ok.
Really there are some good things going on too. Had a lovely dinner out with a friend on Tuesday. We’re going to make this a regular plan every couple of months.
No harm done in my fall almost 3 weeks ago. The tender spots on my head and shoulder are long gone. And for the vertigo I’m having now, the stretches really help. It was hard going at first this morning, getting dressed, tending to my cats, but once I was able to get my neck stretched out I felt much better.
The house painting is done, not the driveway yet, but the house anyway looks good. The gardeners were here Thursday so actually the house and yard look good enough to show off to company this weekend! That always makes me happy, when the house looks pretty, not showing off I mean. It makes me cheer up just to sit outside on the patio and watch the birds in the fountain taking a bath. And the weather has been cooler, so I have been outside more. Even my tomatoes are looking better!
Jim and I saw one play last weekend, and will see another this weekend – it’s summer! Outdoor Shakespeare festival at the Old Globe! Lots of fun things to do in summer. And we’re planning a trip for October too – my writing workshop and a few days in Napa.
I’ve been reading a lot – some for book club, but other books too. The last one was called Still Alice by Lisa Genova, about a woman getting early onset Alzheimer’s. I wouldn’t call it great writing exactly, but I liked it overall. Easy summer reading, even if the subject is a bit sobering. I hope I don’t get Alzheimer’s! I have enough issues going on for anyone helping take care of me in my old age.
In fact the only thing I don’t seem to be doing as much of as I’d like is writing, and that’s a complicated topic. I haven’t abandoned the idea of writing, obviously, since I’m writing today. I’ll just call it summer slump.
I’ll end with saying that I have really good friends. I’ve been thinking about this a lot lately. I’ve never been outgoing, which isn’t the same as being shy or reclusive. I just don’t party much or make friends easily. I like doing things with one person at a time over groups in general. 6 years ago I moved back to San Diego, knowing only 5 people (or couples) from living here from 1979 - 95. Of those 5 only 2 are still friends now. (OK, here’s the skinny on the other 3 – one moved away, one essentially rejected me if I put it simply, and 1 I stopped calling because the relationship was SO onesided). But these days I feel like I have lots of friends and am possibly the most social I’ve been in my life! Maybe it’s because my friends are now my own, not related to kid-centered activities. Maybe it’s because I know more people who are home in the daytime too. And maybe I’m more willing to try to get to know strangers and be social. Maybe it’s because I’m a happier person married to Jim than I was before, and other people see that. But whatever the reason(s), I like the feeling, and I’m grateful – not to the people who are “friending” me, because I assume they aren’t my friends out of pity, but because they like me – but I am grateful to be in the right place at the right time, where I have found people whose company I enjoy. The social scene for people with disabilities is not always easy. Homes are hard to get into. Hugs are awkward. Bladder and bowel issues are embarrassing, so intimacy is complicated. My father once told someone that he didn’t think I’d ever marry. I was 20 then. Maybe some stigmas are dropping, and the best place to start is with the stigma we give ourselves. I’m introverted, but I like having a social life too.
Sometimes I look forward to Jim being out of town on business for the same reasons. It isn’t that I can’t wait to have him leave, it’s that I like my own time in the evening once in a while too.
Earlier today I was really looking forward to a long evening for writing, but it’s not been an easy day, and unfortunately that’s meant my energy level is lower than optimal for getting words together in an interesting essay. In fact I’d even say that some things have me feeling rather depressed. I almost hate to say that, for I suspect a few of my friends will be checking in on me in the near future to see if I’m ok. Well, that’s what friends do, I know. And I do appreciate their concern. I don’t want to stop writing because of how others will react. And I’m not saying leave me alone. But don’t worry about me, I basically am ok, just having a low day.
Here’s why:
My wrist is hurting again, enough that I’m taking anti-inflammatories again round the clock. It seems to be worst at night, so I’m wearing a brace as long as I can stand it when I sleep. It is pinchy and if I wake up because of a jab of pain, I become more aware of the other pinchiness of the brace and yank it off. The pain is a little different this time, sharp jabs of pain from time to time – more at night than when I’m awake. Before it was mostly when I bend the wrist this way or that, and now it seems to happen for no reason. I’m pretty close to going back to the doctor again. It is in the same location, I’m sure it’s the same tendon. I have to face the idea that my wrist pain is never going to totally go away on its own. And that means surgery. I was so optimistic before. The worst part though, is that from time to time, my left wrist hurts too. This is definitely a repetitive activity problem. Surgery – groan - if I have to rest my wrist that’ll mean staying in bed, lying down, unless someone rolls me over! I can’t even sit up without pushing down on my hands. The only thing that will get me through it, is that I’ll know it’s temporary.
I was doing a lot of cooking today, getting ready for a dinner party we’re having on Sunday – and I found myself wondering how much longer I’ll be able to do all this cooking. I made a vanilla bean panna cotta, which is wonderful, but means lifting a pot with 5 cups of hot cream and milk and pouring it carefully through a strainer into another bowl. Well, I cheated and used a ladle. I’ve already stopped making apple cake unless someone else is home to put it in and out of the oven. I used to be able to balance a cookie sheet with a heavy cake centered on it, in and out of the oven, with one hand, while my other hand held me safe in the chair. Probably explains why my wrists are vulnerable now.
[An aside about my apple cake -I got the recipe when I was a teenager. I think my friend had clipped it from a newspaper, and later I adapted it to an angel food pan. I've made it so many times I could make it in my sleep, though these days it's so heavy I need someone else home to get it out of the oven. Been my kids' favorite their whole life. When Stephen was a freshman at Berkeley living in the dorms, they would send out newsletters to parents, and one time they asked for recipes for favorite foods from home, that they would serve on a special "home cooked foods" night in the dining hall. My apple cake won for the dessert category. Stephen was very proud, though he did say it wasn't quite like mine.]
I’m still having problems with my chair making clicking noises. I really should be keeping notes on all the chair stuff. One day I’ll summarize all the hassles of getting a new chair and it’ll show that AFTER the chair arrives there can be months of adjustments. As of now I still have a not quite explained noise that appeared when I swapped my solid and pneumatic tires. I’ve put together pieces made by several different companies, and there’s a little bit of finger pointing going on. At this point, several visits and phone calls since the noise started, the best theory is that the handrims are not tight onto the wheel, or that the wheel lost it’s true when the solids were taken off of it, resulting in a poor fit between rim and wheel. I have an appointment on Monday to try some experiments, and should be able to figure this out then. Next step is shipping the whole wheel back to Arizona where the handrims were made to let the manufacturer try to solve this.
Last week was hot, and I really don’t do heat well. If I didn’t have AC I don’t know how I’d stand anything over 80 degrees. And this house is the pits! I’ve spent a lot of time trying to figure out why it won’t cool down. I know there are lots of reasons – too many halogen lights and electronic equipment, no heat blocking shades on 2 windows facing east, concrete right up to the sides of the house, raised ceilings - but last night when it was 60 degrees out, and all the windows were open, why couldn’t the thermostat in the house go below 77? I think the main problem with the house is the slate tiles on the sides of the house. They retain heat from the sun. Doesn’t help in winter, because there’s less sun! The slates look good, but when they start to fall off, they are getting removed, not replaced, and the whole house gets restuccoed. Maybe the main problem is that I hate the idea of air conditioning when it’s cool outside, and I don’t like spending the money on AC.
Today has been a rough day, mostly because I got off to a bad start. Vertigo was back, I assume I just slept wrong – too much on my left side. Maybe one cat was up against me and I leaned my head back too far. Who knows? It totally messed up my morning, so that I didn’t get out to do the chores I wanted to. They’ll keep till tomorrow. It’s ok, it’s ok.
This should be my mantra – it’s ok, it’s ok.
Really there are some good things going on too. Had a lovely dinner out with a friend on Tuesday. We’re going to make this a regular plan every couple of months.
No harm done in my fall almost 3 weeks ago. The tender spots on my head and shoulder are long gone. And for the vertigo I’m having now, the stretches really help. It was hard going at first this morning, getting dressed, tending to my cats, but once I was able to get my neck stretched out I felt much better.
The house painting is done, not the driveway yet, but the house anyway looks good. The gardeners were here Thursday so actually the house and yard look good enough to show off to company this weekend! That always makes me happy, when the house looks pretty, not showing off I mean. It makes me cheer up just to sit outside on the patio and watch the birds in the fountain taking a bath. And the weather has been cooler, so I have been outside more. Even my tomatoes are looking better!
Jim and I saw one play last weekend, and will see another this weekend – it’s summer! Outdoor Shakespeare festival at the Old Globe! Lots of fun things to do in summer. And we’re planning a trip for October too – my writing workshop and a few days in Napa.
I’ve been reading a lot – some for book club, but other books too. The last one was called Still Alice by Lisa Genova, about a woman getting early onset Alzheimer’s. I wouldn’t call it great writing exactly, but I liked it overall. Easy summer reading, even if the subject is a bit sobering. I hope I don’t get Alzheimer’s! I have enough issues going on for anyone helping take care of me in my old age.
In fact the only thing I don’t seem to be doing as much of as I’d like is writing, and that’s a complicated topic. I haven’t abandoned the idea of writing, obviously, since I’m writing today. I’ll just call it summer slump.
I’ll end with saying that I have really good friends. I’ve been thinking about this a lot lately. I’ve never been outgoing, which isn’t the same as being shy or reclusive. I just don’t party much or make friends easily. I like doing things with one person at a time over groups in general. 6 years ago I moved back to San Diego, knowing only 5 people (or couples) from living here from 1979 - 95. Of those 5 only 2 are still friends now. (OK, here’s the skinny on the other 3 – one moved away, one essentially rejected me if I put it simply, and 1 I stopped calling because the relationship was SO onesided). But these days I feel like I have lots of friends and am possibly the most social I’ve been in my life! Maybe it’s because my friends are now my own, not related to kid-centered activities. Maybe it’s because I know more people who are home in the daytime too. And maybe I’m more willing to try to get to know strangers and be social. Maybe it’s because I’m a happier person married to Jim than I was before, and other people see that. But whatever the reason(s), I like the feeling, and I’m grateful – not to the people who are “friending” me, because I assume they aren’t my friends out of pity, but because they like me – but I am grateful to be in the right place at the right time, where I have found people whose company I enjoy. The social scene for people with disabilities is not always easy. Homes are hard to get into. Hugs are awkward. Bladder and bowel issues are embarrassing, so intimacy is complicated. My father once told someone that he didn’t think I’d ever marry. I was 20 then. Maybe some stigmas are dropping, and the best place to start is with the stigma we give ourselves. I’m introverted, but I like having a social life too.
Saturday, August 14, 2010
a week's worth of notes
I can’t believe I haven’t put a post in for over a week now. I’m not entirely sure why either. The past 2 weeks have been busy, definitely, but I’m fighting some kind of writer’s block too. All the same, I’ve taken notes and in short form – here are some topics on my mind:
Squeak, squeak, squeak…. After finally having the pneumatics and solid tires swapped onto the other wheels, the solids had a persistent squeak when they rolled over a particular spot on the wheel. I called the place I got the solids (and the wheels they are attached to) and was told that when they had been swapped, probably the mechanic broke the cords inside. So I ordered new solid tires, a tool to help put them on, and spare inner tubes and new spoke protection strips. Waiting several days for the parts to arrive meant living with squeak, squeak, squeak…. Driving me nuts. Can’t put the pneumatic set of wheels on though, cause one of them is flat.
Housing – have lived in about 10 places since becoming a paraplegic. 5 of them were single family houses, and everyone of them needed some kind of changes to make them wheelchair accessible. 4 of those were serious modifications of the bathrooms, but all needed ramps and entry changes. The other 5 places were group living buildings – like apartments or dorms, and needed much less work, though each had some minor adjustments too – higher toilet, small ramp, door off hinges for bathroom. The ADA does a good job for public buildings, but access into homes is still quite limited. Often it’s hard to visit friends, and can influence social lives a lot.
Solid tires fixed. They weren’t broken inside, but the spoke guards were bunching up, and not really needed anyway, so they were taken out. And the flat inner tube was replaced too. Unfortunately though, now the wheels with the pneumatic tires are doing a clack, clack, clack… One wheel is worse than the other. It’s obvious, because if you swap them, the noise goes to the other side. Another week till another appointment.
Spent a day in a hot environment – hot for me that is, it was about 86 degrees at my friend’s house. I felt too warm, and knew it, tried to keep cool by drinking more water. But I don’t do well in heat. My metabolism speeds up and the excess water doesn’t help. I had my first serious IBS episode in a long long time that day after dinner. My body just couldn’t hold anything in, not till it had time to fully cool down.
Last Monday I fell. We were swapping the solid tire/wheel set for the pneumatic set. Jim pops off a wheel, pops on another. He has to hold up the back end of my chair with one hand while he does this. He’s done it before with me in the chair. This time however, his hand slipped, and I went back and down. I fell back almost against a wall, there was one of the wheels leaning against the wall, and my head ended up against that. What hurt most was my shoulder. I didn’t drop hard or hit hard, Jim lowered me down and helped break the fall. It didn’t seem like I was very injured.
Then the next day, Tuesday I had this headache all day, and besides the sensitive spot on my shoulder, I realized I had a sensitive spot on the back of my head too. At 11 PM I realized I was afraid to sleep, this fear of head injury was not leaving me. So we went off to Sharp Hospital to get checked out. It took a little while to get seen, but once back in the ER, they were pretty efficient. I had x-rays of my lungs (not totally sure why) and shoulder, blood work, EKG, Cat-scan of my head. My BP was 72/48 at one point which caused them some concern, but it went up a little later. And I was given a clean bill of health, no head trauma (maybe a slight concussion, maybe just bruised), no broken bones and a prescription for Percocet, and sent home about 3 AM. I took one pill before going to sleep and slept well – till noon – not worrying that I might not wake up!
The next day I took another pill, which made me so sleepy an hour later, that I had to lie down and quickly fell asleep. When I woke up 3 hours later, I was SO nauseous. We had evening plans that got cancelled, because I did not want to be around food, let alone eat anything. Jim went out for saltines, ginger ale and bananas for me. The nausea was worse than the headache by far, so no more pills! And now, 3 days later, the headache is gone, and only one spot on my shoulder is sensitive to pressure.
That’s the details of what happened, I could also write about the experience of it all. It was risky, lazy and stupid of us to swap wheels with me in the chair. Next time I climb onto the bed. Lesson learned. I worried only very briefly about injury below my paralysis line. The good thing about autonomic dysreflexia is that if there’s pain where I can’t feel it, it does make my blood pressure shoot up – and that clearly didn’t happen this time! The way I went down was not likely to hurt my lower body. And I’m so grateful I didn’t hit hard, I could have been seriously hurt – landing on my shoulders and neck like that – spinal cord injury written all over this. Head injuries are scary business! The idea that it might be a couple of days before the damage shows up, is scary. Anyway, I’m fine now, and feel lucky.
Other topics – My neighbors house is cooler than ours. It wasn’t a particularly warm day that I went next door, maybe 74 degrees outside if that much. I had to run the air conditioner to get our house down to 76, and next door where they had no AC, they were 74 inside. I’m convinced that the pretty slate tiles on this house hold in heat. Plus we don’t have any greenery up next to the house, except for 20 or so large plants in pots. No grass or shady trees, or even shrubs next to the house. It’s all concrete patio. This is nice for parties, and doesn’t look horrible because there is the great canyon behind us, and the courtyard full of rose bushes… but it must make the house warmer too. I know the concrete tiles make the attic hot, but our neighbor has those too. We also have a lot of halogen lights, but they aren’t on in the daytime! It’s not unusual for this house to be hotter than it is outside. If I’m home I open the windows and that helps. All the same it is annoying.
Yesterday the driveway was painted. The last owner had painted the concrete a darkish dusty pink, and with time it had faded to a shade that contrasted with the garage doors and house. It was worse after we painted the stucco last year. So, this year as well as painting the trim, fascia and eaves, we decided to paint the driveway and garage floor too. This means that I had to have a day when I didn’t leave the property. The only way for me to get in and out is over the driveway – either pushing myself or in the car. We have no separate sidewalk. What’s interesting is that of the 4 houses I’ve owned – 3 were like this. The driveway was the main walkway for everyone. But if it were unwalkable, other people could come up over grass or dirt. Here Jim can come up a small narrow brick walkway through a big collection of tall juniper bushes. It’s a walkway that no one would know was there unless they were looking for it. 2 points here – when did that happen that houses don’t have pedestrian walkways to their door? And you can have multiple accessible entrances into the house, which is a good idea in case of fire, but if all of them lead to the same driveway, maybe that’s not good enough. I didn’t mind being home all day, I do that a couple of days a week most weeks anyway. It was a small reminder of how access is measured differently from a wheelchair though.
Planning another vacation – a driving vacation. I have a 3 day writing workshop at Esalen in mid October. Jim and I will go up together, and he’ll have free time to go hiking or try their hot springs. Then we’ll continue up to Santa Cruz, then Napa for a few days, see Stephen in Berkeley, and be back for Halloween. It’ll be fun, and of course I now have planning to do – 5 hotels to find for one thing.
I can see themes for all the stuff on my mind this past 10 days – housing in all it’s various forms, wheelchair issues continue, and sensitivity to heat.
Squeak, squeak, squeak…. After finally having the pneumatics and solid tires swapped onto the other wheels, the solids had a persistent squeak when they rolled over a particular spot on the wheel. I called the place I got the solids (and the wheels they are attached to) and was told that when they had been swapped, probably the mechanic broke the cords inside. So I ordered new solid tires, a tool to help put them on, and spare inner tubes and new spoke protection strips. Waiting several days for the parts to arrive meant living with squeak, squeak, squeak…. Driving me nuts. Can’t put the pneumatic set of wheels on though, cause one of them is flat.
Housing – have lived in about 10 places since becoming a paraplegic. 5 of them were single family houses, and everyone of them needed some kind of changes to make them wheelchair accessible. 4 of those were serious modifications of the bathrooms, but all needed ramps and entry changes. The other 5 places were group living buildings – like apartments or dorms, and needed much less work, though each had some minor adjustments too – higher toilet, small ramp, door off hinges for bathroom. The ADA does a good job for public buildings, but access into homes is still quite limited. Often it’s hard to visit friends, and can influence social lives a lot.
Solid tires fixed. They weren’t broken inside, but the spoke guards were bunching up, and not really needed anyway, so they were taken out. And the flat inner tube was replaced too. Unfortunately though, now the wheels with the pneumatic tires are doing a clack, clack, clack… One wheel is worse than the other. It’s obvious, because if you swap them, the noise goes to the other side. Another week till another appointment.
Spent a day in a hot environment – hot for me that is, it was about 86 degrees at my friend’s house. I felt too warm, and knew it, tried to keep cool by drinking more water. But I don’t do well in heat. My metabolism speeds up and the excess water doesn’t help. I had my first serious IBS episode in a long long time that day after dinner. My body just couldn’t hold anything in, not till it had time to fully cool down.
Last Monday I fell. We were swapping the solid tire/wheel set for the pneumatic set. Jim pops off a wheel, pops on another. He has to hold up the back end of my chair with one hand while he does this. He’s done it before with me in the chair. This time however, his hand slipped, and I went back and down. I fell back almost against a wall, there was one of the wheels leaning against the wall, and my head ended up against that. What hurt most was my shoulder. I didn’t drop hard or hit hard, Jim lowered me down and helped break the fall. It didn’t seem like I was very injured.
Then the next day, Tuesday I had this headache all day, and besides the sensitive spot on my shoulder, I realized I had a sensitive spot on the back of my head too. At 11 PM I realized I was afraid to sleep, this fear of head injury was not leaving me. So we went off to Sharp Hospital to get checked out. It took a little while to get seen, but once back in the ER, they were pretty efficient. I had x-rays of my lungs (not totally sure why) and shoulder, blood work, EKG, Cat-scan of my head. My BP was 72/48 at one point which caused them some concern, but it went up a little later. And I was given a clean bill of health, no head trauma (maybe a slight concussion, maybe just bruised), no broken bones and a prescription for Percocet, and sent home about 3 AM. I took one pill before going to sleep and slept well – till noon – not worrying that I might not wake up!
The next day I took another pill, which made me so sleepy an hour later, that I had to lie down and quickly fell asleep. When I woke up 3 hours later, I was SO nauseous. We had evening plans that got cancelled, because I did not want to be around food, let alone eat anything. Jim went out for saltines, ginger ale and bananas for me. The nausea was worse than the headache by far, so no more pills! And now, 3 days later, the headache is gone, and only one spot on my shoulder is sensitive to pressure.
That’s the details of what happened, I could also write about the experience of it all. It was risky, lazy and stupid of us to swap wheels with me in the chair. Next time I climb onto the bed. Lesson learned. I worried only very briefly about injury below my paralysis line. The good thing about autonomic dysreflexia is that if there’s pain where I can’t feel it, it does make my blood pressure shoot up – and that clearly didn’t happen this time! The way I went down was not likely to hurt my lower body. And I’m so grateful I didn’t hit hard, I could have been seriously hurt – landing on my shoulders and neck like that – spinal cord injury written all over this. Head injuries are scary business! The idea that it might be a couple of days before the damage shows up, is scary. Anyway, I’m fine now, and feel lucky.
Other topics – My neighbors house is cooler than ours. It wasn’t a particularly warm day that I went next door, maybe 74 degrees outside if that much. I had to run the air conditioner to get our house down to 76, and next door where they had no AC, they were 74 inside. I’m convinced that the pretty slate tiles on this house hold in heat. Plus we don’t have any greenery up next to the house, except for 20 or so large plants in pots. No grass or shady trees, or even shrubs next to the house. It’s all concrete patio. This is nice for parties, and doesn’t look horrible because there is the great canyon behind us, and the courtyard full of rose bushes… but it must make the house warmer too. I know the concrete tiles make the attic hot, but our neighbor has those too. We also have a lot of halogen lights, but they aren’t on in the daytime! It’s not unusual for this house to be hotter than it is outside. If I’m home I open the windows and that helps. All the same it is annoying.
Yesterday the driveway was painted. The last owner had painted the concrete a darkish dusty pink, and with time it had faded to a shade that contrasted with the garage doors and house. It was worse after we painted the stucco last year. So, this year as well as painting the trim, fascia and eaves, we decided to paint the driveway and garage floor too. This means that I had to have a day when I didn’t leave the property. The only way for me to get in and out is over the driveway – either pushing myself or in the car. We have no separate sidewalk. What’s interesting is that of the 4 houses I’ve owned – 3 were like this. The driveway was the main walkway for everyone. But if it were unwalkable, other people could come up over grass or dirt. Here Jim can come up a small narrow brick walkway through a big collection of tall juniper bushes. It’s a walkway that no one would know was there unless they were looking for it. 2 points here – when did that happen that houses don’t have pedestrian walkways to their door? And you can have multiple accessible entrances into the house, which is a good idea in case of fire, but if all of them lead to the same driveway, maybe that’s not good enough. I didn’t mind being home all day, I do that a couple of days a week most weeks anyway. It was a small reminder of how access is measured differently from a wheelchair though.
Planning another vacation – a driving vacation. I have a 3 day writing workshop at Esalen in mid October. Jim and I will go up together, and he’ll have free time to go hiking or try their hot springs. Then we’ll continue up to Santa Cruz, then Napa for a few days, see Stephen in Berkeley, and be back for Halloween. It’ll be fun, and of course I now have planning to do – 5 hotels to find for one thing.
I can see themes for all the stuff on my mind this past 10 days – housing in all it’s various forms, wheelchair issues continue, and sensitivity to heat.
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